Sunday, 28 August 2016

Bringing up a Disabled Child

A couple of months ago I asked my mum to write a post for me about bringing up a disabled child - I've written posts in the past about having a disabled sibling but thought it would be good to get a different perspective from my mum. So thank you to my mum for a lovely post and I hope you enjoy reading:

I have two gorgeous daughters in their twenties, each equally precious to me, but very different from each other. Amy is a university graduate with a responsible full time job and a mortgage. Bethany is profoundly disabled, epileptic and unable to walk or talk.

When we realised Bethany was disabled it was scary and confusing. We didn’t know what her future would be like and the doctors didn’t know all the answers. Life has been an emotional rollercoaster. Sometimes we have been at rock bottom with fear, stress and worry, other times have been so joyful and poignant because we didn’t expect to have them.

Bringing up a disabled child means that there is an underlying sense of fear that never goes away. In the beginning Bethany wasn't expected to live for more than a few weeks. This made me determined to cope with any disability she might have, just as long as she survived – and she did! The fear is still there – fear that her unpredictable epilepsy might worsen or that I might miss something she is trying to communicate. It has made me sort out my priorities! I still stress about everyday things but I know they don’t really matter in the great scheme of things. It makes me appreciate the small things in life and be grateful for what I have.

One thing I am grateful for is the relationship between my daughters. Amy was so pleased to have a baby sister and never showed any sibling rivalry or resentment that her little sister got so much attention and disrupted her life. Several times we had to dash to hospital because Bethany was having seizures or we had to cancel outings. Amy just took it all in her stride. As a five year old Amy didn’t wrap Bethany in cottonwool like the rest of us and Bethany needed that stimulation. Bethany has always done things for Amy that she won’t for others. She loves her big sister, and now that Amy has moved out she gets excited when she knows she is going to see her.

One of the hardest things to cope with is the ‘differentness’ of our lives. It can be isolating and it’s easy to feel we don’t belong in the ‘normal ‘ world anymore. Sometimes we receive unnecessary stares or hurtful comments (not all intentional I’m sure), but we have also received some of the kindest gestures and compliments from friends and strangers alike. We have also met some incredible, inspirational people – both parents and professionals. Having Bethany has made me less judgemental and more accepting of other people.

Having Bethany has made me realise how we are all different from each other – but also all equally important. Bethany may have health issues and developmental delay, but she is happy and content. She is loved and loving. She enjoys being with other people and having friends. She loves playing silly games and laughing. She brings out the best in people and she has made our lives richer.

I have two gorgeous daughters in their twenties. Both are equally precious to me and both have taught me so much about life. I am truly blessed to be their mum.

18 comments

This was such a beautiful and honest post to read, filled with love for both you and Bethany! I think it's great that you've decided to include your mum's perspective in posts about living with disability and it's so nice to hear that your sister is happy and surrounded with people who love her so much! xx

What a beautiful and emotional post, your mother is an amazing writer, just like you. The relationship between you and your sister sounds truly special and I can imagine that your mother is really proud of you too. She also sounds like a really strong woman who is always fighting for her children. I can relate to some things in the post as I grew up with a disabled family member too (physical disability) and we're always getting a lot of stares and sometimes hurtful comments, although just like your mum I'm pretty sure they are not intentional. Growing up with a disabled sibling (or in my case dad) can be challenging but it makes you stronger and I believe more tolerant too xx

Thank you lovely, I'll let her know all the lovely things you've said and she'll be chuffed! She is such a strong woman. I'm sure you can relate to so many of the same things and I completely agree it makes you stronger and definitely more tolerant! Thanks again :) xx

I couldn't help myself from tearing up as I read this post. Your mom is such an amazingly strong and devoted woman, Amy, and I'm sure she has passed down those qualities to you. Though she may not feel as though she lives a "normal" life compared to society, I honestly would value her knowledge and admire her more than those that live the "normal" life. Why? Mainly because she knows and practices the true meaning of love everyday, something that most people are lacking. If it weren't so, we wouldn't have all the issues we have in our society and culture. We need more people like your mom, you are blessed :) Thanks so much for sharing, beautiful, and I hope you have the most amazing week ahead!

This is the most beautiful comment, thank you so much for taking the time to read and comment. You're completely right, I am blessed to have her as my mum and I admire her so much :) Hope you have a wonderful week too :) xx

This is so beautiful... really, what for a beautiful post your mum wrote, and how true it is. I can only imagine the fear of raising up your sister, if things got worse, what to do... but thankfully all went well and she brings the best in everyone, laughing and enriching people's lives. And nice what she said about you, that you never resented the attention your sister got. I always say that, too - the world would be different if ONE of us was missing. We all come to the world to fulfil a purpose. Beautiful mum and sister, blessed family!DenisesPlanet.com

This is such a beautiful post. I can't imagine the difficulties bringing up someone who is less able but you and your mum are so positive and loving, it really shines through in this. Thanks for sharing, it was lovely to read! Danielle x